This October, families from around the world are joining together to fight Juvenile Myositis!
Miles was diagnosed with Juvenile Dermatomyositis after six weeks of worsening symptoms. He was hospitalized three times in two weeks. The first two hospitalizations, the doctors blew us off, claiming his symptoms were all from viral infections. He went from a healthy child to being unable to walk, lift his head, speak, or swallow. At the beginning of his third hospitalization, they told us they were pretty sure he had leukemia. We were devastated. After doing many tests and procedures, they knew he didn't have cancer, but they didn't know what he had. On day 9 of 26 days, he was diagnosed on April 23, 2013, a month shy of his second birthday. Because of his dysphagia (trouble swallowing), he had to have a g-tube surgically placed to provide for his nutritional needs. Shortly after being discharged from the hospital, Miles began to experience regression of all the progress he had made. Because he was already on the maximum dose of oral prednisolone, the only option was to add solumedrol infusions every other week. These seemed to help, but it wasn't enough. He became a "hard stick." The rheumatologist added IVIG, a blood product that contains healthy antibodies from donors. He also had a port surgically placed to make it easier for him to receive infusions. Over a year later, we are still doing solumedrol and IVIG infusions every three weeks. The steroids have made his blood pressure high, so he is on the max dose of his blood pressure medicine to control it. He is on a medicine to protect his stomach from the steroids. He receives methotrexate, a chemotherapy drug, as a weekly shot. He is three years old now. We hope to help create awareness and raise money for research, so hopefully a cure can be found. I often wish he had been diagnosed with leukemia instead of JDM... it has a 95% CURE rate. There is no cure for JDM.
Juvenile Myositis is a life-threatening and incurable disease affecting 17,000 children and adults in the U.S. alone. Juvenile Myositis (JM) causes the body's own immune system to attack healthy cells and tissues, which can cause pain, weakness, inability to walk, disfigurement, and even death. JM can affect virtually any system of the body, the heart, lungs, skin, muscles, and more.
And there is no cure…YET.
But you can make a difference! Please give today and help find a cure.
Cure JM Foundation is a 501(c)(3) nonprofit organization dedicated to finding a cure for Juvenile Myositis. Cure JM is the ONLY organization that solely supports Juvenile Myositis and is the largest charitable supporter of JM research.
With the rarity of this disease, your gift is vital to permitting further studies into finding the cause, best treatments and a possible cure.
Our goal is to never, ever let another child suffer from Juvenile Myositis. And with your help, this goal is well within our reach!